About MS Unites:
MS Unites was launched in late August 2015 and was inspired by a local multiple sclerosis patient’s event we had attended in June of 2015. The event was both educational and inspirational. It was decided that we would put up a website for people local to our Western New York State region where multiple sclerosis is quite prevalent. As a patient myself I noticed a need for a website with local focus and MS Unites was born.
We really did not have much direction nor did we have any idea of what to expect.
Things Sure Do Happen Fast!
Literally within a matter of two to three weeks people from all over the world began visiting the website. We put out a request to the readership of what they might be interested in MS Unites becoming. The response was overwhelming. People from all over the world sent us ideas. Patients, caregivers, family members, clinicians, researchers and even some universities engaged us and what we read was simply astonishing.
It took us months to go through all the responses and begin to set down some achievable goals. We then built some virtual models of how to achieve the goals and a plan of action.
It became clear what we initially put in place would not be capable of achieving the goals and a bunch of re-engineering of the website began and several obstacles appeared before us that we needed to address.
Thoughts and Thoughts and… Thoughts.
We needed to survey the global multiple sclerosis landscape and in doing so we examined hundreds and hundreds of MS related websites. We spoke with clinicians, folks in universities, patient association ambassadors, patients both online and offline and even Pharma. As an online person associated with multiple sclerosis you are probably well aware of the online landscape but are you aware of the offline landscape?
There are literally millions of people who live with MS that do not engage in online MS website activities. Atop this, the landscape of multiple sclerosis is fragmented or more aptly, shattered. This all happened long before MS Unites came on the scene. Mistrust, misinformation, varieties of entities that wish to be representative of the MS community both as individuals and internet presences exist. Virtually all of these entities want make a positive impact in people’s lives who live with multiple sclerosis yet seldom work together. The perception of “We are all in this together” is true. The perception that we are all working towards many common goals is also true. The perception that most of the entities are actually working together is not true.
What we found are that the global frontline patient associations do work together and that they are in very large part responsible for an enormous portion of the gains that have happened in mitigating this horrible disease. Multiple sclerosis has had more gains against managing, understanding and working towards defeating the disease than any other chronic illness including cancer in large part due to the global patient associations.
Grassroots and the Sky Above.
As a grassroots operation we were advised by some very smart folks to not view the MS landscape across the globe from the grassroots upwards but instead in how we can make a difference in peoples lives and the landscape that is MS. Multiple Sclerosis does not recognize nations borders and we were told neither should we. We were informed of oh so many ways we can positively impact the global MS landscape for ALL MS patients both online and offline and we are working to do exactly that.
It’s About You… All of You!
MS Unites exists in its namesake. While we have many goals unlike most MS websites we are all about global impact. Education, advocacy, patient awareness are all part of the equation but there is more… much more in fact and a great many problems exist in the online and offline MS community. These problems often work against you, the patient, the caregiver, the family, the clinician and even the association limited by scope of what can and cannot be done.
We were told by several, not for profit websites that patient associations would never work with us as they are “atop the mountain.”
The fact is the patient associations have been absolutely wonderful. They recognize what we want to achieve as do many clinicians, researchers, universities, and others. Their support, encouragement and open ended access and communication has been simply spectacular.
MS Unites Welcomes You!
You have reached a grassroots website with real goals and mechanisms being worked upon to achieve them.
Heres the thing folks… If your a patient, caregiver, family member, neurologist, researcher, clinician, patient association entity, psychologist, psychiatrist, physical therapist, occupational therapist, MS nurse, MS physicians assistant, general practitioner, nutritionist, geriatric doctor, cardiologist, gardener, hobbyist, writer, artist… no matter who you are or what you do we are ACTUALLY all in this together.
Multiple Sclerosis does not know borders, job titles, languages, age, male, female or any other demographic we choose as people to try define and categorize by.
That’s a BIG statement and a true one.
There are even rifts in the MS patient community between stem cells .vs. medication based treatments. There are rifts between those who have wholly engaged in healthy lifestyles and those who are incapable due to disability or will to do so. There are misconceptions, people truly hurting and people who have absolutely no options in this world. People. In India for example people who have MS might as well be in 1940 with MS in the USA where there was only decline.
WE CAN MAKE A DIFFERENCE FOR EACH OTHER… ALL OF US!
Instead of everyone peeling off in every direction but ones that really can change the paradigm of MS, lets MS Unite together and defeat this disease once and for all. Let’s help each other help ourselves. That’s what needs to happen. It’s what MS Unites is all about.
Please feel free and contact us if you want help make a difference and end MS once and for all.
This is not a scenario of “We can do it.” This is a scenario of “We will do it and we will do it together!”